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msimon3

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Everything posted by msimon3

  1. Our pediatrician told us something similar-- don't worry about the tics, they will go away. That was bad advice for us. The tics didn't go away, and many years later, and more symptoms later like fevers, rashes, numbness, joint pain, chronically elevated white blood cells, we learned it was Lyme disease. The tics were a symptom of the infection, and they resolved when the infection was treated. However, since tics could be caused by many things, it is prudent to consider possible causes and then rule them in or out. For that reason, perhaps consider adding immunology / neurological
  2. Hi Dawn, does your son have any other symptoms ? Sometimes tics are one of many symptoms experienced, and sometimes tics are the sole symptom. Symptoms may help you focus on which next steps will be most beneficial for you. I would recommend seeing an immunologist to rule-in or rule-out any infectious disease with some detailed blood work on red and white blood cells.
  3. Zanzarah, thank you for writing and you will find a good information and people here on this site. Your symptoms are very similar to my experience with Lyme disease, specifically: tics dizzyness moodiness poor handwriting sensitive gut problems headaches and neck pain / meningitis You mention you had a tick bite at age 14, then you had night sweats. Your naturopath said you cannot process meat protein. Do you feel bad after eating meat now? If so, you may indeed have a meat allergy called Alpha-gal which caused by a tick bite: https://ww
  4. Aaron, many of the symptoms you describe are typical of Lyme disease. My advice is to discontinue the homeopathy, and instead find a doctor who will treat Lyme disease with antibiotics. Doxycycline and Metronidazole have been shown to be very effective at treating Borrelia infections, and those antibiotics were the most effective in my experience. Here is a relevant study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/
  5. Edsonr, reading your post felt like reading my own memories. I have read many stories on this board over the years, but none as similar as yours is to mine. So I respond here with hope and urgency, as I wish I had received more information and better guidance ten years ago when our child first exhibited tics. Unfortunately, we were initially guided by two pediatricians to follow the approach of "do nothing, it will go away" which we did for two years. That guidance was bad, and following it was a critical mistake. Over time, the original symptoms of motor tics slowly grew into a v
  6. Dr J = Dr Jemsek in DC?
  7. If your doctor is not familiar with Igenex then perhaps consider finding a LLMD. Regardless of which doctor you use, Igenex will characterize results and indicate positive or negative status which we found helpful. If you suspect a tick bite, the Igenex Tick-Borne Disease panel will test a variety of infections likely from a tick bite. Keep in mind that ticks can transmit a variety of diseases, and testing for diseases other than B. burgdorferi might be helpful in confirming a tick bite if you get positive results. Igenex should be able to tell you the specificity and sensitivity for
  8. If the antibiotic schedule is a treatment for Lyme Disease, then minocycline or doxycycline are effective at reducing bacteria counts however they also create a significant amount of round-body forms or "persisters". The medical community splits here with the IDSA camp saying these persisters are not a risk, and the ILADS camp saying these persisters are the cause of ongoing disease. You will need to make a decision and choose a side. If you think the persisters are a risk, ask your doctor about using a therapy that incorporates antibiotics known to eliminate round-body forms of borrelia, s
  9. I recently observed a similar reduction in tics when lying flat. It's very curious.
  10. Low neutrophils is called neutropenia, and it may have several causes: https://en.wikipedia.org/wiki/Neutropenia For years we observed perpetually low neutrophils and high lymphocytes that coincided with clinical symptoms. Initially we suspected PANDAS but instead we found infection with Borrelia (Lyme disease) and Ehrlichia. After treatment, the clinical symptoms were greatly reduced and the neutrophils and lymphocytes returned to normal values. We used neutrophils and lymphocytes as one measure to determine the level of infection and efficacy of treatment.
  11. Numbness is a symptom of Lyme that we experienced as well. We didn't noticed hot/cold however the skin has different sensory receptors for hot and cold than it does for touch and pressure. http://www.columbia-lyme.org/patients/ld_lyme_symptoms.html
  12. p66 (kDa) is inspecific to Borrelia, meaning it could be an antibody to other bacteria. Regarding why you would use Igenex for a Western Blot test, the short answer is that it will give better positive results that a CDC-based test that Labcorp or Quest offer. The Igenex test looks at two strains of Borrelia instead of one and it tests for more bands (segments of protein to which an antibody will 'stick') -- in particular bands 31 and 34 which are specific to Borrelia. The link above from ILADS is a good one. Here are some other helpful links: http://www.columbia-lyme.org/patients
  13. I am sorry to hear about your experience, and it must have been incredibly disappointing to be treated in that manner. Sadly, I count myself among many parents here who go through similar experiences as we try to locate a doctor who is credible, knowledgeable, and helpful. Once you find a good doctor, one who listens, things will get better. I have used sites like vitals.com and healthgrades.com to research doctor ratings. Those sites might be worth a look for leaving feedback about your experience. Regarding your daughter, have you considered seeing an immunologist or infectious di
  14. I use this site often: http://www.ncbi.nlm.nih.gov/pubmed Some Lyme-related links I like: http://www.columbia-lyme.org/ http://www.ilads.org/lyme/about-lyme.php http://jemsekspecialty.com/lyme_detail/ A prudent course of action might be to record your health symptoms and pair a clinical assessment of those symptoms with any testing that might confirm a diagnosis or rule it out. For example, you cited OCD and rashes, but you also mentioned you are "tired out all the time" and have occasional loss of appetite. If you start with the basis that you are a health normal person, then any
  15. You may want consider Lyme disease and possibly another tick-borne infectious disease like Ehrlichia or Bartonella. In some cases, Lyme disease produces a ring shaped rash called Erythema Migrans. Ehrlichia and Bartonella also can produce rashes in people however the appearance of these rashes will differ from Lyme disease. I mention these three diseases because they are common co-infections for a tick bite, and you cited your rashes appear different (rings then smaller with no shape). There is a lot of information about Lyme disease on this board for you to consider, including neurolog
  16. Do you recall which bands were positive and which lab you used? If you were positive on Lyme, you might want to focus your efforts there. Here is a list of common coinfections: https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/ There are tests for these coinfections and some of these tests have specificity (false positive) or sensitivity (false negative) percentages that should be considered with any result. One line of testing that was very helpful for us was to run monthly red and white blood cell panels. We saw a trend in those test that indicated a sus
  17. Lyme disease can manifest in this way as well. It is called neuroborreliosis when Borrelia infects the nervous system, and tics can develop as a result. Some antibiotics have poor penetration into the central nervous system, so you may want to schedule another appointment with your doctor and get an antibiotic appropriate for a 4yo with good CNS penetration and good efficacy against Borrelia. This resource might be helpful: http://www.ilads.org/lyme/ILADS_Guidelines.pdf Modern research shows that Borrelia can be resistant to treatment, so extended antibiotic therapy may be necessary.
  18. We noticed the same thing. Tics would stop or decrease dramatically during onset of fever and illness.
  19. Lyme remains a clinical diagnosis because there is no test where you have both high sensitivity and high specificity when measuring the presence of Borrelia in the body. The commonly used tests ELISA and Western Blot measure antibodies to proteins and can suffer from false negatives due to either low amounts of antibodies or a narrow interpretation of what is considered an infection. Less common are PCR tests which measure the presence of Borrelia DNA directly and they can suffer from false negatives due to the lack of DNA captured in a sample. Antibiotics can be immunosuppressive, so if
  20. The severe and rapid onset would make me think it was related to an infection. Have you had any general blood work done, like red and white blood cells? Are there any other symptoms that might indicate Lyme disease (e.g. known tick bite, lethargy, rash, joint pain) ?
  21. Steroids are immunosuppressive. Seeing a decrease in symptoms while on steroids, and then seeing an increase in symptoms off steroids may be an indication that the symptoms are caused somehow by an immune process and/or infection. Severe tiredness is one clinical sign of Lyme disease. Has your DD been tested?
  22. Our Lyme DS had high lymphocytes and low neutrophils for many years across several readings. At first doctors were somewhat dismissive about those results, but after a long span of time they stood as a metric to measure the success of the Lyme treatment. We stopped treatment protocol when tics subsided and then we measured WBCs again -- lymphocytes and neutrophils were both normal. For us, those WBCs were a good indicator of immune activity against the Lyme. If you feel the same, you may want to consider the efficacy of current treatment protocol. We modified ours over time when no cha
  23. You are in the right place. You will find a wealth of information in this forum, and many people who are, or were, in the same situation as you. Lyme disease is a big deal. Borrelia are exceptionally good at evading our immune system and persisting through antibiotic treatments. How we perceive and treat Lyme disease is an even bigger deal. The medical community is split -- many doctors follow a 20 year old treatment protocol that many say is outdated and does not work while other doctors point to new research and treatment protocols that they say is more enlightened and appropriate.
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